Transplant: A Memoir

By Bernardine Watson

TRANSPLANT: A Memoir is a page-turning, personal journey into one Black woman's battle with kidney disease and the American medical system. Bernardine Watson's book is at once a truth-telling and an affirmation of the life force propelling us all toward love and hope. A vibrant, powerful portrait of what it means to be Black, fe

• Language: English
• Publisher: Washington Writers' Publishing House
• Release date: Oct 20, 2023
• ISBN: 9781941551905

Bernardine Watson

Bernardine (Dine) Watson, winner of the 2023 Washington Writers' Publishing House nonfiction award for Transplant, A Memoir, is a nonfiction writer and poet, originally from Philadelphia, but who now lives in Washington, DC. She has written on social policy issues for numerous major foundations, nonprofit organizations, and for The Washington Post Health and Science section and She the People blog. Her poetry has been published in numerous journals and anthologies, including Beltway Poetry Quarterly, Rising Voices/ University Professors Press, Sanctuary/ Darkhouse Books, and The Great World of Days/ Day Eight Arts. Dine is a member of the 2015 class of the DC Commission on Arts and Humanities Poet in Progress Program and was selected to participate in the 2017 and 2018 classes of the Hurston Wright Foundation's Summer Writers' Workshop for Poetry. She is a member of Day Eight Art's Board of Directors.

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Praise for Transplant

African Americans represent 13% of the US population but account for nearly 35% of people with kidney failure in the US. Bernardine Watson’s account of living with a rare kidney disease depicts just how real these statistics are. It is vital that patient advocacy organizations like NephCure and patients like Watson continue to raise awareness and fight for more innovation in the kidney disease space. — Kelly Helm, Executive Director of Patient Engagement at NephCure

"Bernardine Watson has written a beautiful memoir about the struggle to maintain health while living with a potentially lethal disease. But Transplant: A Memoir is mostly a book about becoming: a woman, a mother, a member of a family she learns to love better, and a loved and treasured soul mate.

Through her struggle, she becomes much more than her disease and bigger and braver than she could have imagined." — Marita Golden, Author, Creative Writing Coach, Literary Consultant

"With honesty and humor, Bernardine Watson takes us on her personal journey to conquer kidney disease, a health condition disproportionately affecting Black people and other people of color in the US. Transplant: A Memoir, is also an adult love story, celebrating the power of care and kindness in building a strong relationship." —Louis Massiah, Documentary Filmmaker, Founder/Director of Scribe Video Center, Martin Luther King, Jr. Scholar at Massachusetts Institute of Technology

TRANSPLANT

Bernardine Watson

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Washington Writers’ Publishing House

Washington, DC

Copyright © 2023 by Bernardine Watson

All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever without written permission except in the case of brief quotations

embodied in critical articles or reviews.

COVER DESIGN by Andrew Sargas Klein

PRINT BOOK DESIGN and TYPOGRAPHY by Barbara Shaw

E-BOOK FORMATTING by Melanie Hatter

WASHINGTON WRITERS’ PUBLISHING HOUSE

2814 5th Street, NE, #1301

Washington, D.C. 20017

More information: www.washingtonwriters.org

In Memory of T, Clint, and Cassandra—healers in their own ways.

CONTENTS

Acknowledgements

Prologue: That Smell

1. My Secret Life

2. Your Creatinine Level is Creeping Up

3. May Day! May Day!

4. Everything’s Going to be Okay

5. Happy New Year to Me

6. Me and Baby Alice

7. Get Yourself Together

8. Happiness is a Man Called Joe

9. Traveling and Other Mercies

10. Deep in the Belly of the Beast

11. An Education

12. Time to Make a Move

13. Hope?

14. Hoping and Waiting

15. Loss, Love, Life

Epilogue: Fall 2022

Book Club Discussion Guide

Acknowledgments

This book took its time being born, and I want to acknowledge and thank those who helped bring it into the world:

My parents, Alice and Bernard; and my siblings, Alice—my first kidney donor, Judith, Linda, and brother—Bernard Jr, whom we call Jerry. Thank you for loving me.

Joe Davidson, my sweet husband, from whom I continue to learn, every day, about love and life.

Rob Watson, my son, an inspiration from the day he was born; Hakimu and Jasiri, who have expanded my heart.

Naomi Grace, my granddaughter, who keeps me hopeful about the future.

Judy Payne, my altruistic donor and friend.

Valarie Ashley, who was the first to tell me that my story was a book, and who read every page of the draft.

Marita Golden, my incomparable literary coach, who helped me shape a sprawling manuscript into a meaningful whole.

Marilyn Smith, who worked with me on an earlier version of this book.

Kathleen Novak and Jeanie Shackleton, friends who were with me at the beginning of this sojourn and remain in my corner and my heart.

The doctors and technicians who have cared for me, including Nurse Margaret, David Grant, Michael Rudnick, Edward Kraus, Jack Moore, Robert Montgomery, and my current nephrologist, Judith Veis, with whom I trust my life.

Finally, I want to acknowledge NephCure Kidney International, National Kidney Foundation, National Institutes of Health, and other health-related and advocacy organizations that are working on better treatments for kidney disease and equity in the health care system.

Disclaimer

This book is a memoir. It reflects the author’s present recollections of experiences over time. Some names and characteristics have been changed, some events have been compressed, and some dialogue has been recreated.

Prologue:

THAT SMELL

HERE I AM AGAIN. Back where I never thought I’d be, especially not on December 22, 2004, just a few days before Christmas. Am I dreaming? If I’m dreaming, somebody please wake me up. My husband, Joe, parks the car and walks me as far as the front door of 11 Dupont Circle. He’s reluctant to leave but has a work meeting.

Are you sure you’ll be okay? he asks, reaching for my arm. I’m not at all sure that I’ll be okay. I’m trembling on the inside but trying my hardest to look confident and calm on the outside. I look my husband dead in the eye and lie to him, nodding yes.

I’ll be all right, I say. I don’t think anything much will happen today… probably just an orientation. Whatever happens, I’ll handle it. You go on.

I heard myself say I’ll handle it, a familiar refrain coming from me. I’m used to handling things whether I need help or not and am not yet used to a husband who has my back. Frankly, the longer we stand outside the building, the more I want Joe to go. I want to get this first day over with. But my sweet husband won’t leave.

You know I can come back for you around ten thirty, right? That’s the time you’ll be finished, right? he asks, pulling at my coat sleeve for emphasis.

Baby, I’m pretty sure I’ll be able to drive myself home, I say, feigning patience. You don’t have to come back over here. Besides, I don’t know exactly how long I’ll be. Like I said, today will probably be an orientation. Listen, let me go on in. I don’t want to be late.

All right, Joe says, tugging at my coat sleeve again. I’ll be back for you at ten thirty. You’re not driving today. Maybe the next time, but not today. I need to see the inside of this place, anyway. I want to see where my baby will be.

I hug him with one arm and pull at the heavy glass door of the building with the other.

A guard is sitting at the desk in the building’s lobby reading the newspaper. Before I can ask him for directions, he glances at me and mumbles, Dialysis, right? Take the elevator down one to the basement, and returns to reading his paper.

I stand glued to the floor, stunned into immobility. That man has no idea that he’s tapped into a deep insecurity of mine and hit me with a very low blow. What is it about me that makes him think I could only be going to the dialysis center? Aren’t there at least four more floors and many other offices in this building?

After a few weeks of coming to 11 Dupont Circle, I understand exactly why the guard drew the conclusion he had. Most of the Black people who come into this lobby every day are going down to the basement for dialysis. But on my first day in the building, I have no idea who comes in and out. His assumption pisses me off. How dare he, I think as I check my reflection in the elevator mirror. Do I look like a dialysis patient? Is that all I am now? Is it all down from here?

The elevator doors open into a dark vestibule, which doesn’t seem to belong to the rest of this brightly lit, beautifully landscaped building. As I turn to my right, the first thing I see through the windows of the vestibule doors is a disturbingly large, white banner with big, bold, black and red letters in case I have any doubt about where I am:

FRESENIUS MEDICAL CARE, DUPONT CIRCLE DIALYSIS CENTER

The waiting area on the other side of the doors is lined with rows of plastic folding chairs. All the chairs I can see are filled with Black people talking, laughing, and drinking coffee or soda. Some are eating what look like breakfast sandwiches from fast-food restaurants. Ugh. I stand for a while outside the doors looking in. The scene looks like a group of people at a social gathering rather than patients waiting to be hooked up to machines.

How the hell am I going to do this? I ask myself under my breath. These are not my people. I have no choice, and I enter.

Oh my god, that smell. An awful but familiar odor hits me in the face as soon as I enter the room. I place my hand over my nose and mouth to keep from inhaling the putrid air. Immediately, I am flooded with memories of my first go-round with dialysis—a brief two-month stint before my first transplant in 2000, at Philadelphia’s Presbyterian Hospital. The center at that hospital smelled as foul as this one. A dialysis technician at the Presbyterian center told me that the stench came from the chemicals used to clean the dialysis machines. I had no reason to doubt the guy, but to me, the odor seems a more sinister mixture of blood, sweat, tears, fear, human body waste, and yes, death.

Looking for a place to sit down and steady myself, I grab the first empty chair. With my head lowered, eyes squeezed shut, and coat still wrapped tightly around my body, I hope no one will bother me. I need a moment to get myself together. I can’t seem to calm my racing mind and pounding heart. I can hear a yoga teacher telling me to breathe and be in the moment. But I don’t want to breathe this air, and the present moment, in this chair, in this room, in this building, is the very last place I want to be. Swaddled in my cocoon, I retreat to the narrative that has been playing in my head since my kidney failure the week before.

I shouldn’t be here. I shouldn’t be facing dialysis again. Everyone—all the doctors and nurses who treated me before, during, and after my transplant—were so certain I’d be okay. My older sister, Alice, had been my donor, which almost guaranteed a successful transplant. I remember the transplant doctor at the University of Pennsylvania Hospital, where the surgery took place, saying confidently, You and your sister are a perfect blood and tissue match. You should do very well. This transplant should last you at least twenty years. I believed them. My family had prayed for me incessantly. Where did those prayers go? Was all that praying for naught? I’d fallen woefully short of doing very well. After not quite five years, I am sitting in the lobby of Fresenius Medical Care, once again waiting for my turn at the dialysis machine. Merry Christmas to me.

I’d counted on the doctors to be right. I have plans—a life to live, milestones to achieve. As far as I was concerned, I’d been a bit of a late bloomer and needed to make up for lost time. A few missteps in my youth had landed me behind my peers on the professional development curve. At age nineteen, instead of experiencing life on a college campus, I was married with a baby. For several years I’d lived on welfare and food stamps and dragged my baby boy through more ratty living situations than I want to remember while I scratched and clawed my way through college.

In 1984, at thirty-three years old, and with a great new job and two dysfunctional marriages behind me, I thought I was poised to fly. However, that year, for reasons I will never understand, I was diagnosed with a kidney disease that had a name I couldn’t pronounce—Focal Segmental Glomerulosclerosis (FSGS). According to the doctor who gave me the horrible news, FSGS had the potential to destroy my kidneys and kill me. Did I fall apart? No. I handled it. I pulled myself together like the tough South Philly girl I am and spent the next fifteen years working and striving to stay as healthy as I could, telling almost no one about my condition. Why should I? My diagnosis was nobody’s business but mine. Besides, who wants the pity or curiosity of sympathizers? I certainly didn’t.

FSGS was my secret until I couldn’t keep the secret anymore.

By 1999, the year my daddy died, my diminishing kidney function began to make me ill. I’ll never forget the day a nephrologist told me, You’re going to need dialysis or a kidney transplant soon.

The doctor was right. I needed both. I went through all that back in 2000. Now here I am again.

Chapter One:

MY SECRET LIFE

IN 1984, WHEN I WAS THIRTY-THREE YEARS OLD, living in the Twin Cities, and newly separated from my second husband, my gynecologist found protein in my urine during a routine examination. She suggested that I see a nephrologist. My friend Kathleen, who went with me to the appointment, remembers the gynecologist saying that my condition could be serious. I’d already been through a lot in my life—poverty, welfare, teen pregnancy, and two disastrous marriages—so I didn’t let her concern worry me very much. Besides, I hadn’t heard anything about kidney disease running in my family. Don’t get me wrong, there is plenty of illness on both my mother’s and father’s sides. Diabetes? Both my father and his father before him had sugar, as many in my community call the disease. In fact, the one time I met my father’s father, he was sitting in a wheelchair with both legs amputated from the ravages of diabetes. High blood pressure? Show me a Black family with no high blood pressure. As a kid, eavesdropping on grown folks’ conversations, I heard my older relatives complain about their pressure all the time. Alcoholism and drug addiction? While fortunately, neither of my parents suffered these afflictions, plenty of people on both sides of my extended family did. But kidney disease? At the time I was diagnosed, I’d never heard anyone in the family mention it. Despite my attitude, I decided to follow my gynecologist’s recommendation and consult a kidney specialist. This young gynecologist had come highly recommended by several female acquaintances, and she’d taken good care of me during my years in the Twin Cities. Besides, I had a good job and good health insurance. Seeing the specialist couldn’t hurt. I was certain that the protein in my urine was a fluke, or an anomaly caused by the stress of my failing marriage.

My friend Jeanie insisted on going with me to the biopsy procedure. I felt perfectly capable of going alone, but Jeanie wouldn’t hear of it. She was one of the few close friends I’d made in Minneapolis and one of the only people I’d told my secret. We’d met at Control Data Corporation, the Minneapolis computer company where we both worked, and immediately bonded over our love of fashion and soul music. We also had something even more significant in common—we were single mothers of sons, which bound us even more closely. Jeanie is White, but she’s as brown in coloring as many of the Black women I know, and just as soulful. She’s also tiny but seasoned by more than her fair share of tough breaks in life. I respected, loved, and trusted her enough to let her see me vulnerable.

The nephrologist wasn’t crazy about Jeanie being in the procedure room but finally gave in to my repeated requests. Jeanie stood beside the operating table wearing a gown and mask, holding my hand, and watching as the doctor guided a needle into my back and pulled out a small piece of my kidney tissue. Pointing to pictures of my kidneys projected onto a screen, the doctor explained that I had a relatively rare disease of the kidney called FSGS, short for Focal Segmental Glomerulosclerosis. For many people like me, he explained, there is no known cause for FSGS. The disease attacks the kidney’s filtering units, called glomeruli, and causes serious scarring, which allows too much protein to be released into the urine. According to this nephrologist, FSGS could lead to permanent kidney damage and even failure. He pointed to highlighted sections of my kidneys and asked, Can you see the scarring, Ms. Watson? The damage is minimal at this point, but it’s real.

Honestly, I couldn’t tell which portions of my kidneys were scarred. All I could see were two bean-shaped globs of red flesh on either side of my spine. If my kidneys were diseased, I’d have to take the doctor’s word for it. I was too stunned to see much of anything. I looked over at Jeanie who was squeezing my hand tightly. She shook her head reassuringly as if to tell me that things would be okay. But all I could think was FSGS? What the hell? How can I possibly have a life-threatening disease? I’m only thirty-three years old!

The doctor waited patiently as I stared blankly at the pictures of my insides. Eventually, as we sat in his office, he patted my arm and said sympathetically, Ms. Watson, I know this is a lot for you to take in. However, you’ve told me that you’ve been fatigued for some time and your gynecologist sent you to me because of the protein in your urine. Both are symptoms of FSGS. Now we have the biopsy results to support that diagnosis. Ms. Watson, FSGS is a serious disease with no known cure. If your FSGS results in kidney failure, the only options will be dialysis or a kidney transplant. You need to be followed regularly.

In the doctor’s waiting room, Jeanie put her arms around me and reluctantly said goodbye. She had to get back to work. The receptionist looked at me expectantly as I passed her desk, but I didn’t stop to make a follow-up appointment. I walked out of the office with as much calm and dignity as I could muster. FSGS? I couldn’t even pronounce the full name of this disease. As I drove back to my apartment in St. Paul, the sky opened with a violent rainstorm. I started to cry too. Why not? I was in my own car. No one could see or hear me. Out of habit, I pushed the radio dial. The song 96 Tears by Mark and the Mysterians was playing, and I sobbed along.

That day was a rare moment for me. I wouldn’t cry like that again for a long time. Although I’d been living in the Twin Cities for almost three years, I was still a South Philly girl, raised to be tough, and self-reliant. I didn’t call my family back in Philly and tell them what was going on with me and I had no intention of telling my twelve-year-old son, Robert. One of the reasons I’d come to the Twin Cities in the first place was to give my son a more carefree childhood than he could have in Philadelphia. I certainly wasn’t going to tell him that I had a disease that could kill me.

In addition to Jeanie, I eventually told two more friends, Kim and Kathleen, about the time bomb that could be ticking away inside me. With the breakup of my marriage and now this dreadful health news, even I needed a few friends to help steady me. Finally, I told my estranged husband, Alexs. I owed him money and used my awful diagnosis to buy some time and a little sympathy. I told no one else. As a young girl, I learned well from my family and community that life could be unfair, even mean. There was nothing and almost no one I could truly count on but myself, even if my own body proved unreliable.

I grew up in a Black, poor to working-class neighborhood in South Philly, just blocks away from the 7th Ward area where W.E.B. DuBois did his landmark, 1899 sociological study, The Philadelphia Negro. My grandparents, on both sides, came to Philadelphia from Virginia and Florida, as part of the Great Migration, when, according to the DuBois study, between 1910 and 1930, over 1.5 million Black citizens left the Jim Crow South and poured into the north seeking freedom and economic opportunity. Philadelphia was a major destination for Black people fleeing southern oppression. In 1900, the Black population of the city was approximately 63,000. By 1920, a few years before both of my parents’ birth, the City’s Black population had more than doubled to approximately 134,000.

My parents, Alice and Bernard, both from large, struggling families, had five children: Alice, named for my mom and often called Baby Alice; Me—Bernardine, but nicknamed B or BB; Judith; Linda; and the youngest and only boy, Bernard Jerome Jr., or Jerry. All seven of us lived in a tiny, rickety, row house at 1437 Montrose Street. Grandma Daisy Hayes, who’d separated from my grandfather, Samuel, when my father was a boy, lived next door. Daddy’s sister, Aunt Betty lived down the street with her children, and scores of aunts, uncles, and cousins lived within walking distance.

We were the Hayes clan, well known and respected in the neighborhood as people who didn’t bother anyone if no one bothered them. For much of his adult life, Daddy worked on construction sites as a mason tender—an onsite assistant to the stonemason, who helped organize tools, transport materials, and keep the job site clean. My father was a highly intelligent man, who later in life told me how much he hated that job and how disrespectfully he was treated by White co-workers. I’m fortunate that I didn’t kill someone on that job, he admitted. But Daddy got up between four and five every morning and went to work to support his family. In the early 1970s, when my father was in his forties, he got a job as a business agent for Laborer’s Local 332 and later proudly served as the local’s vice president.

Mommy was a homemaker until my little brother Jerry was old enough for school, then she worked first as a kindergarten aid and later as a clerk-typist for the Philadelphia School District. Grandma Daisy dipped ice cream on weekdays in the basement of John Wanamaker’s Department Store. However, to supplement her income, she also ran a speakeasy out of her home on the weekends, selling booze and chicken or fish dinners and renting rooms to customers who got lucky or were just too drunk to go home.

With few exceptions, we and the neighbors we lived among were hardworking people. We loved each other, fought each other, and looked out for each other. At the same time, despite our closeness, in proximity and emotion, everyone did what they could to keep their personal business to themselves. In our world, people came and went, babies were born and died, folks coupled and broke up, and fortunes rose and fell without much open discussion of the circumstances.

Ain’t nobody’s business was the unspoken, and when necessary, spoken mantra. My father, Bernard, often told us, What happens in this house stays here. There would be hell to pay if he ever heard that one of us put family business in the street. Of course, there was always gossip, but engaging in too much idle prattle could be dangerous to your well-being. My Aunt Betty once punched our neighbor, Miss Louise, in the face and sent her to the hospital, for gossiping about some nefarious activity she’d seen going on in my aunt’s house.

She should have stayed out of my business, was the only reason Aunt Betty ever gave for the assault.

When I think back on the people I grew up with, their attitudes about others poking around in their private affairs make sense to me. Most in my family and community didn’t have much more than their pride, and they wanted to keep it. Life was hard enough without everyone knowing your ups and downs, offering their two cents about how you ought to live your life, or even worse, using the information to make you feel lower than you already did. This philosophy and way of life, which molded me as a child, influenced the way I lived my life as an adult and faced FSGS.

You’d better know how to take care of yourself, was another tenet I heard early and often. My father took good care of us as children, but when I came home pregnant at nineteen years old, he made it clear that I had to find another place to live. Bringing shame on the family wasn’t an option. If you want to act grown, he told me, You need to get out of my house. A few weeks later, I did. Likewise, once I understood that I needed to fight for my health, I knew that the fight was up to me and no one else.

EVENTUALLY, I learned to pronounce the name of my disease correctly: fo-cal seg-men-tal glo-mer-u-lo-scle-ro-sis. Also, by reading articles from the National Institutes of Health, National Kidney Foundation, NephCure Kidney International and the Mayo and Cleveland Clinic websites, I learned about its horrible effects. I read that African Americans had approximately four times the risk of FSGS as European Americans. Like most kidney diseases, FSGS damages the kidney and causes waste to build up in the body. Kidney disease generally is so destructive because it can cause other major, deadly health problems such as heart disease and increase the risk of stroke or heart attack. However, FSGS is considered particularly pernicious. Within five to twenty years of onset, the kidney scarring caused by FSGS meant total kidney failure for most patients. The only treatments to try and prevent kidney failure focused on slowing the progression of the disease by using steroids to improve kidney function, medications to keep blood pressure under control, diuretics to help the body get rid of excess fluids, and dietary changes such as reducing salt, to lighten the load on the kidneys. Often these treatments were unsuccessful. Unfortunately, despite FSGS’s significant health burden, there were few therapeutic options for those who suffered from the disease and the therapies available often had significant toxic effects on patients. This disease I was dealing with was no joke.

While I was beginning to understand the seriousness of my FSGS diagnosis, I procrastinated in seeking follow-up care. Despite my toughness, I feared the disease. However, I wasn’t crazy, and several months after the biopsy, I finally made an appointment for a second opinion with a nephrologist at the Mayo Clinic in Rochester, Minnesota. What was the point of living in Minnesota if I couldn’t take advantage of having the best hospital in the world just a few hours from my home? Maybe a doctor at the famed Clinic would look at my biopsy and see something more benign than the dreaded FSGS. Maybe, with Mayo’s focus on research and innovation, they could save my kidneys. Maybe, by some miracle, a Mayo Clinic doctor would tell me I’d been misdiagnosed, that I didn’t have kidney disease at all, that the whole business had been a medical error.

In June of 1985, I enlisted my friend, Kim, to drive me approximately two hours south on Route 52 from Minneapolis to Rochester. Kim and I met in a women’s group and became unlikely comrades. Both of us had joined the group in search of a direction in life, but beyond feeling adrift in the world, we would seem to have nothing else in common. Kim looked like the kind working-class, bleached blond that I might have looked down on, had I passed her in the grocery store. However, once I got to know her, I found that I identified with her gritty determination to overcome an unhappy childhood and make a good life for herself. Besides, she loved Black culture and Black men. After I’d lived in predominately White Minnesota for a few years, her true appreciation of Blackness endeared her to me immensely. We had fun together and sometimes I needed to forget my troubles and just have fun.

I was ecstatic when Kim agreed to drive to Rochester with me. I had never been very good with directions and feared I’d get lost and miss my appointment at the Clinic. Further, I needed more than the car radio to keep me company. I was on edge, and left on its own, my mind would begin to race around and around with questions and recriminations: Why is this happening to me? Why didn’t I go to the doctor when I first started feeling fatigued? Maybe if I had listened to my body, I wouldn’t be in this fix now! Kim, who talked incessantly, was my insurance policy against arriving at the Mayo Clinic a complete basket case.

I didn’t know at the time that the doctor I would see that day at Mayo, Dr. James V. Donadio, was a world-famous nephrologist and an emeritus professor at the Clinic’s College of Medicine. However, over the years of my sojourn with FSGS, whenever I’d recite my medical history to a new doctor and mentioned Donadio’s name, I’d see a spark of true engagement in their eyes.

You’ve been examined by Jim Donadio? they’d ask with surprise. I’d pull out the follow-up letter from Donadio as my ultimate trump card. That letter had magical powers. Suddenly, after viewing Donadio’s scrawling signature at the bottom, I’d see doctors perk up and pay a little more attention to me. I could almost read the